advice please

[Seanfleming25]

Hi I’ve now finished steroids as Consultant stated he thought it was unlikely I had GCA . My scan was negative and I had been on steroids for 2 weeks so question this. My symptoms have now returned and my GP wants to put me on Naproxen. This really doesn’t feel right and need to get a second opinion. Any suggestions of consultants that have been good for you guys?

[DorsetLady PMRGCAuk volunteer]

Would be useful if you state roughly where you live and how far willing to travel…and do you mean through NHS or privately?

Our most recommended ‘go to’ Rheumy is Prof Rod Hughes working out of Chertsey -

topdoctors.co.uk/doctor/rod...

[Seanfleming25 in reply to DorsetLady]

I’m in Dorset but willing to go anywhere that is suggested. I’m happy to pay privately for initial consultation but can’t continue as have limited funds

[DorsetLady PMRGCAuk volunteer in reply to Seanfleming25]

Ahh remember now did suggest Dr Khurshid at Poole -but he’s only NHS. Maybe try RH then -he usually does a one-off private appointment and then either telephone catch ups or refers back to GP.. unless you get other recommendations.

[PMRpro Ambassador]

I agree with the suggestion of Rod Hughes.

What symptoms have you got?

[Seanfleming25 in reply to PMRpro]

Pain in right side of head when I move. Wakes me up it’s so bad .

[PMRpro Ambassador in reply to Seanfleming25]

No other symptoms? How do you feel in general? Any jaw pain or visual symptoms? Where on your head is the pain?

[Seanfleming25 in reply to PMRpro]

I feel very unwell. Also pain at jaw bone, mouth ulcers. Pain in my temples mainly on right side

[PMRpro Ambassador in reply to Seanfleming25]

And that all improved on pred? There is obviously something going on that is inflammatory and I do agree it is a bit cavalier to rule out GCA. Have you got the results of any tests? I would at the least email Rod Hughes and enquire what he thinks.

[Seanfleming25 in reply to Seanfleming25]

my bloods tests were originally showing signs of inflammation and I’m still anaemia. My last blood test ESR was normal but I suppose it would be on steroids

[SnazzyD in reply to Seanfleming25]

How did your head symptoms respond the Pred?

[Seanfleming25 in reply to SnazzyD]

I was like Superwoman. I felt amazing. I already have fibromylgia so suffer with pain on daily basis. I felt so much better all round

[PMRpro Ambassador in reply to Seanfleming25]

Did your "fibro" pain improve too?

[WilfDog in reply to Seanfleming25]

Hi Seanfleming25

I'm sorry some symptoms have returned, but it sounds to me like it could possibly be Temporal Arteritis, in which case it needs treating with Prednisolone and not Naproxen, and likely the reason your symptoms were dampened with the steroids.

My mum had Temporal Arteritis in her late 50's and the doctors couldn't work out what was wrong with her until she mentioned the pain in her temples and side of the head. Obviously I'm not a doctor but your symptoms and previous treatments point to it. I would really get an urgent review so you can have it checked out and resume Prednisolone. This is how my mum was treated.

If I was you, I wouldnt delay and try and get an urgent appointment with your docs or a quick private appointment to check this out, because if it is Temporal Arteritis it needs treating quickly.

I hope you get sorted. Xx

[Seanfleming25 in reply to WilfDog]

Thankyou I totally sgree with you. It’s crazy because when I first saw my GP she said that I am most likely taking too many pain killers that are causing rebound headaches. Two weeks later she referred me for GCA. When the scan came back negative she now offered me a barrage of pain medication to which I replied I had too many. Therefore she offered Naproxen as this hadn’t been offered. It’s totally appalling what GPS get away with and play poker with our lives!!!

[WilfDog in reply to Seanfleming25]

Unfortunately, some doctors won't look outside the box, so to speak. I would return and see another doctor and relay your concerns. Ask to be checked out for TA. Write everything down, your symptoms, how the Prednisolone helped you previously, and since stopping it the symptoms that have returned. Ask them if they would test for it, and if not, why not, as it points to it. They may give you a valid reason, as I'm not a doctor, but without investigations, how do they know.

Good luck! Xx

[DorsetLady PMRGCAuk volunteer in reply to WilfDog]

Seanfleming25 had an ultrasound for GCA [or TA as you refer to it] which was negative…although we all know that result may not be totally correct as they were on steroids at the time. So I doubt further tests will be considered. But I agree the symptoms do sound very much like GCA.

[WilfDog in reply to DorsetLady]

I didn't know she had undergone an ultrasound test for TA, (sorry if that confuses, I just call it TA and not GCA).However, it is still worth pressing for another one, given like you say, she was on prednisolone then, so the scan could have given a false reading, and especially as her symptoms have returned now she is off Prednisolone.

[DorsetLady PMRGCAuk volunteer in reply to WilfDog]

The name TA has gone out of fashion nowadays although that’s what I was told back in 2012 and is more commonly referred to as GCA (or cranial GCA if you want to be picky🤔). Ironically my temporal artery was never affected -but another more important one ( ophthalmic artery) was - hence my sight loss.

Agree, more thought required by medics.

[WilfDog in reply to DorsetLady]

Sorry to hear you lost your sight. That's what my mum was afraid of. Fortunately they caught it quick. There shouldn't be any delay when it is suspected

[DorsetLady PMRGCAuk volunteer in reply to WilfDog]

Lost sight before diagnosed ..

[WilfDog in reply to DorsetLady]

So sorry to hear that..

[PMRpro Ambassador in reply to WilfDog]

She actually says in the post "the scan was negative" and if you had checked on their profile it was a scan for GCA.

[PMRpro Ambassador in reply to WilfDog]

The point is - GCA WAS checked for and the scan was negative. Some doctors think that that is gospel truth - it is when it is positive but when it is negative it does NOT mean the GCA isn't affecting other arteries and symptoms are then predominant. It is a fight we are trying to fight - but what do we know? We are just patients ...

[WilfDog in reply to PMRpro]

I agree, and if she was on Prednisolone when she had the scan, then it may provide false information. Her symptoms have returned after stopping Prednisolone, so surely that is significant, or you would think so anyway.

[PMRpro Ambassador in reply to WilfDog]

That's what we said earlier - and what we think.

[Seanfleming25]

yes it did. I felt like I could climb mountains. My GP said I would feel like that as steroids are a very good pain killer and now wants me to try naproxen. She thinks the headaches are due to a virus

[PMRpro Ambassador in reply to Seanfleming25]

They are a good painkiller FOR INFLAMMATION. Fibro is NOT inflammation and pred rarely works for it. So I would doubt the diagnosis of fibro - it could well be PMR which can present looking very similar, especially when misdiagnosed and not treated properly. PMR can be a forerunner symptom of GCA, Patients on pred still need the usual painkillers for some things - so the GP is incorrect in the assertion it is a good painkiller, I wish I knew what gives them that idea - other than the fact it is THE painkiller for the pain of PMR and many rheumatic disorders.

[Pixix in reply to PMRpro]

I quite agree! Even when I was on 17mg of pred it did not help my fibro pains at all. They are quite different from the PMR pain, & in different places, though some overlap does happen when one or other is flaring. But that’s because the whole body feels in pain (it’s not really!!)

[PMRpro Ambassador in reply to PMRpro]

PS - I discussed this with my rheumy yesterday - a world expert in the field. He just rolled his eyes at your doctor's assertion. It IS a good painkiller - when the pain is due to inflammation. Nothing else ...

[sidra1968 in reply to Seanfleming25]

a virus? I would say that is quite unlikely since they went away on the pred. Please do not give in on this, find a new doctor soon

[Grammy80]

Since I was not diagnosed for almost a year of classic GCA symptoms.....I would certainly be going to seek out a private. Too risky not to. My best to you, 💞

[Mewy]

I live in Canada so I cannot help with a consultant recommendation. But, a question: What is your Sed rate? In my relapse my blood test showed slightly elevated. Whereas in my first bout with PMR my sed rate was very high. My nurse practitioner gave me Pred because like you she felt it was a relapse and she was correct. Don't give up, you know your body.

Mewy